this is a well run, total volunteer agency, that provides face to face support to patients, caregivers, family and friends who deal with this insidious disease (25 cities/66 meetings)......also with one call to the 24 hr hot line or with a click of a mouse on their web site map the patient can be directed to hospitals and drs who are skilled in treating amyloidosis. As with any illness early diagnosis and treatment is critical........volunteer turnover is near zero which shows the dedication of its none paid helpers
At the end of a support group meeting, patients as well as caregivers come up to me and thank me for this support group. Prior to this group, misinformation regarding the survivor rates and treatment of amyloidosis was astounding. This group has distributed the most up to date research from the best amyloidosis centers. The knowledge and education that this group provides is invaluable to an amyloidosis patient/caregiver making their healthcare decision. Without this group's input, this disease would still be considered fatal instead of treatable.
My husband was diagnosed with AL Amyloidosis and Multiple Myeloma in March 2014. That same week our son found the Amyloidosis Support Groups' webpage. He emailed Muriel Finkle and also spoke with Kay Rowley. They encouraged him to attend the Portland meeting, which was two days later. Our two sons and I attended that meeting, and it changed the course of my husband's life. Not only were we welcomed by Kay and Muriel, but we also met the oncologist and cardiologist who would in a short time save his life.
ASG through Muriel and Kay keeps our family abreast with all the latest happenings in the world of Amyloidosis. We feel their love and support and know that we are not alone. This time when our family attends the Portland ASG meeting on May 2, my husband will be with us. Thank you, ASG, for helping to save his life. We are grateful.
A family oriented group. Muriel Finkel is an exceptional person whom is available 24/7 to give support and educational advises. She has given us and others care givers and patients the help and support that beyond words can express
WOW!!! i am so HAPPY to see you are still doing this. When Frank Burden was there in Feb 2013 and couldnt get out the support totally lifted his SPIRITS. I would love to Help in which ever way i could in honor of him
Thank You Muriel and all those that were there
Carol Johnson Burden
I'm not sure I can find the words to express my appreciation for ASG. I reached out the the group a few years ago, when my father was first found to have familial amyloidosis. Our family was just THROWN! He was the first to be diagnosed, and no one could make any sense of what was going on. I reached out to ASG on a whim, to just find someone --- anyone -- who could understand. Instantly, you no longer feel alone. The facilitator, Muriel, and the participants respond quickly and with compassion. They are open to share knowledge (and they have a TON of clinical and practical/real-life knowledge). They create a sense of support and empowerment, and do so without pity.
Recently, I have started to lean on ASG again as I was experiencing some scary amyloidosis-like symptoms. I wanted to get tested, but didn't know how. ASG told me how ... within the hour. Folks from Mayo and Boston were offering to help. (Yes, within the HOUR!). Then I tested positive for the gene. The first thing I did was reach out to Muriel to get a plan. I knew she, and the other ASG folks, would be able to talk me off the ledge and EMPOWER me with up-to-the-minute information and support.
There are real people and real experts behind ASG. And you can feel their desire to change the game. When their literature says "to some day turn this disease into a mere nuisance" (or something to that effect :) they mean it. To the core.
Unfortunately, my dad's journey was confusing and sad, and often filled with deep feelings of helplessness. But I truly believe my journey will be different ... thanks in large part to ASG. They got me off to the best start possible. And for that I am truly, truly grateful.
The ASG is a clearinghouse of information. For patients and caregivers this is the site to be on. Muriel Finkle and other support staff members around the country are nothing but angels without wings. As a patient… I am so grateful for all they do.
After a year of tests for increasing ALP level, my husband was diagnosed with AL Amyloidosis in 2012. We found the phone number for this support group online and Muriel answered the phone one Sunday afternoon. She was very confident, knowledgeable, and backed up everything with thorough studies and reports. We are so thankful for all her help and care and great advice for healing treatment at Boston University Medical Center. While receiving his stem cell transplant and high dosage chemo , we attended the weekly support group meetings in the clinic and received so much encouragement and information.
Thank you so very much.
Keep up the labor of love!!
I was recently diagnosed with Amyloidosis, and didn't have a clue where to turn to get more information about treatment, etc.. Fortunately I found the Amyloidosis Support Group website, which put me in touch with the amazing work that this group is doing. It provides great information, feed-back, and support sessions for those of us with this disease. Can't say enough good things about the work of two ladies
who are dedicated to this cause -- Muriel Finkel and Kay Rowley. Any question I have is answered promptly. I have attended one support group session -- in Arizona -- that was a wonderful way to 'network' with other Amyloidosis patients. I am looking forward to attending another one in the Seattle area in September. Can't say enough good things about this organization!!!
It is wonderful to have a place to go and get questions answered. This has been a remarkable resource and comfort. I especially want to say that Muriel Finkel and Kay Rowley have been a God send and are in constant communication with us to get information to us about Familial Amyloid meetings that we needed to go to and trial information for us to check out and participate in. My husband has Familial Amyloids, as does his brother, a sister and one to be checked. His Mother and her 3 brothers also passed from this disease. He has cousins that are also afflicted. We have 3 sons that we were also worried about, but with the trials that are going on at this time, I think they will have a chance at health in the very near future.